On! and back off...

All I have been able to think about for the last week is turning on my Esteem. On top of the fact that I am going crazy not being able to hear, I am dying with anticipation of what everything will sound like. Will it sound different? Will it sound better? Will it sound clearer? Will I like it? Will it be loud enough? Will I be able to understand people? Did this surgery make a difference?

I have kept my remote in my bedside table and I have found myself just staring at it at times. Wanting so badly to reach over and turn it on. Every time it caught my glance, I would get an adrenalin rush. There is something so appealingly frightening about the unknown, especially when you know how great the end result could potentially be. I felt like my future was sitting right in front of me and I just couldn't wait to see what was in store for me. 

Each night over the last week, I became weaker and weaker as I realized just how difficult it is to hear without my Esteem. I just couldn't take it anymore. So, I made the executive decision that I was going to turn it on, just for one quick second to, you know, to see what it sounds like. Dr. Murray, as well as other Esteem patients, had warned me that I may experience feedback and that things may not sound quite right at first. My ear was still healing and would continue to be healing over the next couple of months. Knowing this, I tried to keep my expectations at a minimum.

I placed the remote over the processor that lies underneath the skin behind my ear. I took a deep breath and with a click of a button, I heard a familiar beep. As I looked around the room searching for a signal of sound, I realized that I had been holding my breath. I let out a heavy sigh. Ok. It was definitely on. I couldn't help but smile. I could hear myself breath again! I could hear myself laugh with joy. I could hear saliva swishing in my mouth. Oh, how much I missed all of these bodily noises!

So many emotions came rushing through me in this moment. I felt like this giddy excited little kid on Christmas! It was like I had just been injected with the greatest drug and happiness was running through my veins. I started flipping through the different programs and volume levels to see if there was any feedback. There was none! Had everything healed? I wonder why they wanted me to keep this off for another 5 days? 

I wanted so badly to keep it on forever and go explore sounds, but I felt so guilty having turned it on and going against what I was told to do. There was obviously a reason Dr. Murray wanted me to keep it off for two weeks and I really did not want to take any chances at this point.

That night, all I could think about was turning on my Esteem again. Maybe Dr. Murray would be okay with it knowing that I had not experienced any feedback? I decided that it would not hurt to ask so the next morning, I emailed Dr. Murray's office to see how he felt about me turning it back on for good. I checked my email about every 5 minutes until he responded that afternoon telling me to go for it! Parts of me felt skeptical about "rushing the system", but   I was desperate for sound in my left ear. 

I turned it to the highest setting right off the bat. It took only a couple of hours for me to get past the overwhelming sensation of the "me" noises, like breathing, swallowing, and chewing. It was then that I realized that even the loudest setting did not seem loud enough for me. Voices were not very clear either. I knew that it was early in the process but I couldn't help but feel a pang of disappointment. It was almost if my heart had stopped for a moments time. For the remainder of the day, I had to keep reminding myself that my ear was still healing, my program/settings were not properly adjusted, and that even the littlest bit of sound is better than nothing.

That evening, my ear started to feel bloated with pressure and I had an overwhelming sensation that my ear needed to pop. It felt as if my ear was swelling and was going to explode. I reached my hand behind my ear and began to skim my fingers along the tape that rested peacefully over my incision. When I touched the middle of the incision, the pressure became worse. It wasn't painful, just different and uncomfortable. I felt like something was not right and began to worry that I had made a mistake by turning it on too early and starting off at such a high level. Although I was mentally ready to have my Esteem back on, I knew that my ear was not physically ready for this. 

I decided to turn it off and keep it off for the next couple of day until I reached my two week marker. I think this was God's way of telling me that I need to be more patient and that good things will come to those who wait.

Getting my Hair Did

The next morning Fras and I met my parents at their hotel for breakfast and attempted to figure out the best way to wash my hair. After my initial surgery, Dr. Marzo had not provided us with any strict guidelines; his only request had been to simply wait 5 days before showering. Easy enough. However, Dr. Murray's request were quite demanding. While he did give me permission to "shower" 3 days after surgery, I was told that I would have to keep the incision behind my ear dry for 10 days and water out of my ear canal for 8 weeks. Essentially, he was trying to tell me that I could wash my body but my hair would have to stay dirty for at least 10 days. I mean, how in the world did he expect me to wash my hair without getting the incision wet? 

At first, I didn't think that 10 days would be that bad. How dirty could my hair get if I would be sleeping and not very active? However, the day of my post-op appointment, when they took the helmet off, is when I realized just how bad my hair situation was going to be. In order to avoid shaving large amounts of hair, Dr. Murray slicked back my hair with a glue like substance to keep it away from the incision. While this is good in theory, as I would rather have gross hair than no hair at all, it was definitely no treat for the eyes to see.

The post-op instructions from Dr. Murray's office provided some suggestions for how to meet these insane guidelines. The only way to remove the glue was to massage hand sanitizer into the hair. So, I decided to start with this as a first step. I carefully brushed my hair to make a very stylish 80's side ponytail, leaving the crunchy portions of my hair flowing free. For about 20 minutes, I repeated the following two steps over and over again: massaging in hand sanitizer and brushing out the crunchiness; massaging in hand sanitizer and brushing out the crunchiness. Once I had gotten most of that out, it was time for the hard part.

In order to avoid water getting in my ear, the post-op instructions suggested placing a cotton ball in the ear canal then covering with Vaseline. In theory, this seemed so simple and getting the actually cotton ball inside my ear was, but every time I tried to smear Vaseline on the cotton ball, the cotton ball would come right out. When I would put it back in, the Vaseline on the cotton ball, as well as the remains on my fingers, would make the areas around my ear all oily. I thought the point of showering was to get the oil out and here I was making things seemingly worse. Once the cotton ball was in and greased up, we placed a plastic bag around my ear like a cocoon so my ear canal was now safe from water. 

Now we had to find a way to keep the incision dry. The post-op instructions did not provide any suggestions for how to do this. What? Did they really just assume that people would go 10 days without washing their hair? That is absurd! I wasn't sure how to go about doing this, so I posed this question on the Envoy Esteem Patients Group on facebook (i.e., an online support group for current and potential Esteem recipients - a place to share experiences, to ask questions, and to gain more information about the implant). Other patients suggested simply holding a thick towel over my ear while having someone else take care of washing my hair. Since I couldn't think of anything better, we decided on this method. 

While I kneeled in front of the bath tub with my head hanging over the edge, I held a towel over my ear while my mom washed and rinsed my hair. After about 20 minutes and 3 shampoo coats later, my hair was clean at last! My "freshness" was complete. I finally had the herbal essence moment I was looking for! Ahhhh Yessssss!

While it felt great to finally have my hair clean, OH MY GOODNESS! What a process that was! I couldn't believe I would have to go through this every time I wanted to shower. In a moments time, I felt helpless and I hated the idea of not being able to do something on my own. I quickly abandoned these thoughts because, in reality, it is only 10 days. For some people this is a lifestyle. Just as many people take their hearing for granted, I had taken my independence for granted. It made me realize just how easy it is to feel sorry for ourselves and to take all of Gods gifts for granted. At the end of the day, it is up to you to find the beauty of the storm. 

Home Sweet Home

After almost 5 days in San Jose, it was time for us to head home. Most people typically head back home a day or two after surgery, but since I had experienced so many complications following my initial surgery (i.e., nausea/vomiting/fever/pain), we wanted to give ourselves a bit of a buffer in case I responded similarly to the revision surgery. 

Thank goodness I didn't! 

Recovery thus far has been a piece of cake compared to last time. To be completely honest, we probably could have left the day after surgery. But I have to admit...I definitely did not mind having an extra couple of days to relax at the hotel and have other people take care of me for a change. I am so very grateful for my husband and mother-in-law who made this trip seem like an actual vacation. I am a busy girl on the go and it is not very often that I am able to just relax and take it easy. I almost forgot how nice it is to just not do anything. To not have to worry about going to work, making money, paying the bills, making sure the house is clean, that the dog has been fed, that I called so and so back. For the first time in a while, it was just about me me me. Was I comfortable? Was I feeling okay? Did I have enough to eat? Was there anything I needed? I must say that I was loving all of the extra attention I was getting from my husband and was a tiny bit disappointed that this mini-vacay was coming to an end. The stress in preparing for this revision surgery had put some strain on me and my husbands relationship, to say the least, and I feel that this trip helped restrengthened our bond. It gave me the reassurance that I am not alone in thing. That I have a partner for life.

While I had enjoyed these lazy days, I was anxious to get home and back into the swing of things. However, I had been so wrapped up in, well, me-time, that I completely forgot we were flying Southwest Airlines and had to check into our flight 24 hours in advance in order to ensure that we had a decent boarding position. Luckily, my husband had also, surprisingly, thought of this and woke up early to check us in and print our boarding passes. We ended up in the "B" boarding group which was okay, but did not guarantee that I would be able to find a window seat on the right side of the plane (so I could rest my head without putting pressure on my left ear).


My husband sensed my anxiety about this (partially because I was not so discreet about it), so after we checked in and got settled at the gate, he ventured to customer service to see what he could do. He explained to them that I had just gotten surgery and requested that we be one of the first to board the plane so I would be able to find a comfortable seat. They agreed and gave him a little blue envelope that we were to present upon boarding.

As promised, we were the first passengers to board the plane. We took the first available seats that we laid eyes on; right in the front row which mean lots of space, leg room, and a window to lay my head against (my poor husband took the middle seat). I popped a pain pill and off we went. I had been worried that ascending and descending would make my ears pop, which, I could only imagine would be a very unpleasant experience. Fortunately, I slept baby the whole two and a half hours. If my ears were popping during the flight, I did not seem to notice!

I woke up as the flight attendants were making their final rounds. I was so groggy and in a haze that I almost forgot that my parents would be meeting us in Denver. Their plane had arrived about 20 minutes before us and we had planned to meet up with them at baggage claim. I cannot tell you how nice it was to see them. There is nothing in the world like having your mom there to take care of you and get you settled.   

The first thing I said when I saw my mom was, "we HAVE to do something about my hair." At this point, it had not been washed for 5 days!! I have very thin and straight hair, so, as you can imagine, it had become stringy and greasy real quick. I normally cannot go more than a day without showering! My parents laughed, and said they would help me take care of it tomorrow. Everyone was tired from a long day of traveling. 

While my parents and I collected our bags, Fraser went to get our car from the long term parking lot. After a 30 minute car ride, we were FINALLY home. Ahh... There is really no place like home! 

As my husband and I laid in bed that evening, we both felt as if some weight had been lifted off our shoulders. The worst was over and we had made it through yet another roadblock in our lives. And to our surprise, we were still alive, standing tall, with big smiles on our faces. While life seems almost impossible at times, the strength we gain from these experiences are irreplaceable. They help mold us into who we are as individuals as well as in our relationships with others. I know one day I will look back on this and realize just how strong it made me and nothing will seem impossible anymore.

Phone Consultation with Dr. Murray

I cannot believe it has already been almost two months since my last blog (and since I found out that I will need a revision surgery). I have been trying to schedule a phone consultation with Dr. Murray for about a month now, but since he is so busy, his phone consultations are currently booked out a month or two in advance! It’s crazy! I think I had an angel watching over me because, out of the blue, I received a call from Rebecca, Dr. Murray’s assistant, early Monday morning to let me know there had been a cancellation and that Dr. Murray would be available to speak with me later that afternoon.  What a wonderful surprise! Normally, I have a bit more time to prepare before my doctors appointments, but I was, fortunately, able to populate an exhaustive list of questions and was even able to send them to Dr. Murray before we spoke on the phone. Unfortunately, our phone call was limited to 30 minutes, so there was not enough time to get to all of my questions; however, I feel that all of my immediate concerns were addressed.

Dr. Murray was running a little bit behind schedule so he called me about 30 minutes after our scheduled time. I swear those 30 minutes could not have gone by slower, but I have to say that it was well worth the wait. Dr. Murray had been my top choice when researching for my initial surgery, but I opted to have the surgery with Dr. Marzo, in Chicago since this location was close to my hometown, St. Louis, Missouri. I love my husband and he is an exceptional caretaker but sometimes, only momma can make you feel better.  Not only are his credential outstanding, but I have also had the privilege to speak with his former and current Esteem patients, who have had so many wonderful things to say about him.  My conversation with Dr. Murray truly exceeded my expectations. Finding a surgeon that is both knowledgeable and personable is difficult to come by these. I think what I was most imporessed with was his honesty and I got the sense that he really seemed to care about his patients and their success with the Esteem.

After our brief introduction and "hello", we started making our way through the list of question.

Melinda mentioned that my driver was not connected properly to my stapes. How does this typically become unconnected? Should I expect this to happen again?

Dr. Murray's initial response was not very direct. He essentially said that while it does happen too some patients, he is unsure of the definite cause. Of course that was not good enough for me! So after some additional probing, he mentioned that he did have some theories about why this may be occurring, most of which seem to occur due to “technical issues” during initial surgery.  Thinking back on this, I am not exactly sure what he meant by “technical issues”, but I am sure that if it has anything to do with surgical procedures, the concept would be far beyond the grasp of a laymen. He did, however, mention that we are less susceptible to these “technical issues” during the revision surgery, which means that there is a greater likelihood of making the proper connection between the device and our ear bone during the revision surgery compared to in the original surgery. This was great news to me! I also had some concerns that maybe this disconnect was caused by something I did, such as strenuous activity or even touching the surgery area too much. Dr. Murray assured me that this possibility was highly unlikely. 

What should I expect when I come to San Jose for my surgery? What exactly is done during this surgery?

When I come in for my pre-op appointment the day before surgery, he will take a look at my ear through a microscope in order to officially determine the issue as well as the type of surgery that will be required to fix it.  If it seems reasonable that the driver is not well connected to the Stapes, he will run some special test, that have actually not yet been created to date. Envoy is currently in the process of developing state of the art tests that should more quickly and readily identify connection issues between the Esteem and the middle ear. He expects that these test will be available sometime before October (my scheduled surgery date); however, it is difficult to tell at this point in the process.

In preparation for my surgery, I will need to be open to a couple of plans.  The worst case scenario would be having a full revision surgery in which they remove, replace, and reconnect the driver. This procedure requires that I am put under anesthesia, but it does not take nearly as long as the initial surgery. However, there is very much the possibility of scar tissue as well. Scar tissue is fairly common and is caused from the initial surgery (and any subsequent surgeries you undergo).  The more surgeries you have, the more potential for scar tissue to build. Scar tissue tends to form around the device, but it can also connect to the ear drum and ear bones, which both play a critical role in how sound is transmitted and received, thereby affecting the clarity of sound. This is part of the reason that people with scar tissue often have issues with feedback. When scar tissue builds up, it inhibits the engineer’s ability to effectively program the device. Luckily, this issue can almost always be fixed by simply working directly through the ear canal. During this procedure, a laser is used to remove the excess scar tissue and only requires local anesthesia.

Up into this point in our conversation, he was planning to do conduct the revision surgery for me. However, when I asked the next question, the direction of our conversation took  a complete 180 degree turn.

I have heard that there have been some issues with the adhesiveness of the cement used during surgery. What is this issue, exactly? Is it advisable for me to proceed with the revision surgery knowing that this issue has not yet been resolved?

In recent months, they have been able to identify that the cement being used is part of what is causing the lack of success in some patients, like myself. While he did not seem to know what the exact cause of the issue is, he did say that they were working to get to the bottom of it. 

During our discussion of this topic, he asked about the quality of my life and the benefits I have received from the Esteem. He was essentially trying to determine if this surgery was something that I needed right away or if I was getting enough gain that the revision surgery could wait. If I chose to push back the surgery to a later date, he would be able to provide me more clarity on the issue.  Without having the full inside story into the root of the problem, he expressed a bit of uncertainty in moving forward with my revision surgery in October. While I would see some improvement from a revision surgery now, it would essentially be a 50-50 gamble at this point (he actually made some poker analogy that I didn’t quite follow so I am close to positive that this is what he was saying).

So, while he does not currently have any scientific reason to recommend that I postpone my surgery, his intuition is telling him that I should hold off until they have had more time to investigate the root of the issue and develop new protocols on how to proceed with fixing the issue. If they were to operate in October before the cement issue has been resolved, I got the sense that it may actually make things worse in the long run, for example, additional surgeries lead to more scar tissue build up (which is related to feedback and clarity issues and difficulty in tuning the device). As my husband said, “It would be like using duck tape to hold parts together, instead of actual replacing the problematic part". Surgery for me right now would be just a quick fix, but would not actually correct the issue completely. He mention that he would move forward with the surgery in October if I felt that I had not gained much from the Esteem.

In short, since I have progressed and obtain some improvement with the Esteem, he is essentially suggesting that I wait until the cement issue is fixed so when I do get the revision surgery, he can be sure that I will get the full gain and accuracy that the device has to offer. When you have your doctor essentially tell you, “if it was me, I would wait”, I think this is very sound advice. While I appreciate his honest opinion and the fact he has my best interest at heart, it REALLY sucks that I have to wait even longer for this issue to be resolved. It also sort of worries me as well as Dr. Murray said that if there truly is an issue with how my driver is connected, then the connection, as well as my hearing, will get worse over time.

You can probably guess what my next question was:

How much longer until this issue is resolved?

He estimated that it would take about 6 months to a year for this issue to be resolved. I got the impression that Dr. Murray will be the lead investigator in resolving this issue, which makes me very confident in his recommendations to withhold from surgery at this time. I am 28 years old, which, to him, is still young, so he said if we take our time and are patient, the better my results will be in the end and the more time I will have to enjoy all the has to Esteem offer!

Our game plan now is to hold off on the revision surgery for 6 months. I will speak with Dr. Murray again in early January to discuss the progress towards resolving the issue and what make sense in terms of moving forward. He mentioned that, even if the issue is figured out 6 months down the road, we may still want to wait an additional 6 months to make sure that the issue is 100% corrected and proven to be effective in other patients. The initial surgery and the revision surgery are almost two different things. While there are protocols in place for how to conduct the initial surgery, Envoy is just getting started identifying issues and the most efficient surgical method to deal with those issues. Since this is state of the art technology, how to deal with the problems are not well known as it takes almost a year for them to determine if a method is a true success or a failure.

I hate to sound so selfish but it really sucks to know that there is something wrong with my ear, but that I have to wait 6 month to a year to fix this issue. While I am confident in my decision to hold off on surgery, it is going to be very difficult for me to be patient during this time.  But I guess all I can do right now is hold tight and know that when the time is right, my miracle will come true.

A Revision Surgery is in My Future

Today was my appointment with Melinda, the lead engineer at Envoy. I have been beyond nervous and anxious since I made this appointment two weeks ago. While I was so excited to finally know what was going on inside my ear and start to get answers to my many unanswered questions, I have also been a nervous wreck to find out what those answers would be. Or better yet, that there would be no answers. That I made a huge mistake by taking this leap of faith, and that the Esteem would never work for me. 

My poor husband who has had to tolerate my emotional and somewhat snappy attitude the last 2 weeks. I have been a bit on edge and cannot say that I have been the most pleasant person to be around. When I got home from work yesterday, I, naturally, picked a fight with him. I mean, what else is a girl to do when she comes home from work and finds her husband waiting outside on the front porch playfully grinning at you as your car pulls in the driveway. Work has been beyond busy and having this appointment hanging over my head as I struggle hearing my way through life has been emotionally straining to say the least.  Why is it that we push people away when we truly need them the most?

After my husband retreated to his man cave in the basement, to save himself from my less than pleasant attitude (he knows better than to mess with me when I am feeling this wound up), I collapsed in bed, took my first deep breath in almost 2 weeks, and actually screamed. Not like ha-ha I screamed, but horror movie scream. You may think I am crazy but I have to say that it was very liberating. My world collapsed around me and for those 5 very long seconds nothing in the world mattered. I realized that I had hit my breaking point and that the only possible thing that could help me was a, much needed, rejuvenating sleep.

When I woke up this morning, I felt like a weight had been lifted off my shoulders because I knew that no matter what the outcome of my appointment was today, that there was nothing I could do to change the past or what the future will be. Letting go of things that cannot be controlled is a very difficult thing to do, but it can be so freeing when you do. I was in good spirits when I got to my appointment with Melinda and she was just as wonderful as everyone said that she would be. She had a great positive energy about her, she really knew her stuff, and answered every last question that I had, even with another patient waiting for her appointment to start.

My appointment consisted of doing lots and lots of tests. They did both standard hearing test as well as tests on the device to make sure that each of the Esteem components were working properly. After conducting these tests, she found that while the Esteem components (sensor, sound processor, and driver) were working just fine, it seemed that the driver was not connected properly to my Stapes (one of the three middle ear bones that are used with the Esteem). 

I pulled this picture and definition from the Envoy Esteem website (www.envoymedical.com) so you can understand what I am talking about.

The Driver is attached to the stapes in the middle ear.  The Driver converts the electrical signals that it has received from the Sound Processor back into mechanical vibrations and transmits these signals to the stapes and the cochlea.

The electrical signals that are being adjusted through the sound processor are sent to the driver, which stimulates the stapes and send signals to the cochlea and then off to the brain for interpretation. Essentially the input of sound is being processed correctly but there is a “bug” in output of sound, which is leaving a smaller signal to be interpreted. Melinda said that this is why the distribution of my gain on my audiogram is not consistent; not all of the signals are being processed.

While it feels great to know what exactly is going on with my ear and to finally have my questions answered, this is, unfortunately, not a painless fix. The only way to improve my outcomes with the Esteem is a revision surgery. I will have to be under anesthesia but was told that the surgery is much less invasive than the first and will not take as long since they know exactly where the issue lies.  Also, I will have to be with one ear after surgery but only for two weeks this time. I do not think I could handle another two months of hearing out of one ear as I did with the first surgery!! I was also very relieved to hear that I would not have to pay for this revision surgery, and that Envoy would also cover our travel and hotel expenses.

I decided that I would be having my revision surgery with Dr. Murray and I was told that his assistant would be contacting me Monday to schedule and review all of the details. The timing of this couldn’t be worse, since June through August are my busiest months at work, and my husband will be starting his new job in August and will be attending a very intensive training through the month of August before his job officially starts. Since he is just starting he is not going to be able to take off work right away or be very attentive when I am recovering at home. Also, my sister is expected to have her baby the first week of September so my parents will be in New York City with her before and after the baby comes. So, I am not exactly sure when it will realistically make sense for this to happen. Obviously I want to be able to do this as soon as physically possible, but I also do not want to set myself up for more than I can handle. Also, thinking back to how difficult is was for me to recover from the first surgery, there is no way I would be able to take care of myself. So, my next steps are to talk with work and also trying to find a reliable caretaker and go from there.

And my journey of learning to hear continues (or should I say starts over)...

The Importance of Aural (Auditory) Rehabilitation

While searching online, I found a really interesting article about the importance of aural (auditory) rehabilitation for adults with Cochlear Implants. I think that the topics and ideas presented in this article can be important for rehabilitation after any implant. The article is titled Making a Sound Connection: Rehabilitation for Adults with Cochlear Implants, was written by Mary Koch, MA, CED, and can be found on pg 6 of the following link: http://hearingjourney.com/userfiles/File/BionicBeat_Vol3Iss1_2006_1.pdf

What I found particularly interesting about this article is that we do not actually hear with our ears, we hear with our brains. [info from the rest of this paragraph did not come from this article. this was written by me based off my understanding of how we hear and how hearing loss affects the ear. i hope that it is portrayed accurately (in easy to understand laymen terms) but please refer to the professionals for more detailed information about these topics.] This actually makes sense when you think about how we hear. Sound enters our ears and the frequencies of sound are transformed into electrical signals as they pass through the middle ear to the Cochlea. The Cochlea stimulates thousands of tiny hair-like cells which send electrical signals to the brain to be interpreted. This is where our ability to understand what is being spoken comes into play. For most individuals with sensorineural hearing loss (like myself), the hair-like cells and/or parts of the Cochlea have been damaged which then affects how sound signals are converted into electrical signals and sent to brain. What is great about the Envoy Esteem Implant is that it, in theory, bypasses the damaged parts (i.e., Cochlea and hair like cells) and instead transforms and processes electrical signals through the Esteem processor. Each individuals processor is programed to meet the specific needs of each recipient based on their level of hearing loss. These "altered" and "improved" electrical signals are then send back through the system and to the brain for interpretation. 

As stated in this article, one of the biggest misconceptions of receiving a hearing implants is that the understanding piece of the puzzle will come immediately as we gain more sound and volume. However, while we can hear sound better because of the implant, our brain does not always immediately make sense of these signals right away. Additionally, this article also mentioned that the longer a person is hard or hearing, the more challenging it can be for them to be able to recall and form meaning of sound. In order to bring this understanding piece into play, we must form new auditory pathways as well as the memory skill to be able to retain the sounds. The purpose of Aural (auditory) therapy is to imprint this information in our brain so that these connections can be built more rapidly leading to greater success with the device.

The article also presents Norman Erber’s Heirarchy of Auditory Skill Development, which is essentially the process in which our brain learns to understand.

• The first step in the process is Detection. This is the stage in which we become aware of our capacity to hear, as detected through an audiogram.
• The second step is Discrimination. This is our ability to differentiate between the sounds that we are hearing. This is actually what I am currently practicing through my therapy. 
• The third step is Identification. By going through the sound discrimination exercises, we are essentially imprinting our auditory memory with these sounds so that we are able to recognize and start putting meaning to these sounds.
• The fourth and final step is Comprehension. This is our ability to hear by simply listening and at this level we are finally able to fully engage in conversation. 

These are just a few of the interesting things I found throughout this article. This article also provides some resources for getting yourself started on the aural rehabilitation track (and how those around you can help). Also, I have been exploring websites that provide free online practice tools so will be posting those soon for those who are interested. 

Life Since Adjustment

Since my adjustment in December, things got off to a slow start due to being sick and the fluids in my ear, but for the last couple of weeks, things have been getting progressively better! I thought I would take a moment to reflect on how things have generally been going since my readjustment.


Until about 3 weeks ago, I was not able to turn my volume past 7. Every time I tried, I would get high pitched feedback. However, in the last 3 weeks I have been able to make it all the way up to volume 10 and I have to say I am LOVING the volume gain (I want even more!) and cannot express what a difference it makes! After going a month without being able to change the settings, I never thought that I would actually make it to this level! This is very exciting not only because of the volume gain I am getting but also because it means that I am healing and the fluids are starting to drain!


I found that I spend most of my time on the "A" profile, which is considered my "Everyday" setting. I have tried the other settings but this is the most comfortable for me in almost all situations. I am not really crazy about my "C" profile ("Music/TV Watching" setting). I feel like the sound of swallowing is so distracting it is difficult to focus on anything else. When I am on this profile I feel like my ears are going to explode. I have this weird ear popping sensation. It is almost like there is too much base which is making my ear feel lots of pressure. I have not been out too much in the last month, but my "B" profile (i.e., background noise setting) has been pretty great! I found that it works better at bars/clubs where the the loud noise is more constant than when out to dinner at a restaurant. I have actually preferred to stay on the A setting when I am out to eat.


I found that I am finally starting to gain some of the distant noises I have been wanting. I actually attended a lecture for work which took place in a large classroom. I was seated towards the back right and heard every word except when I was thinking about how surprised I was to actually be hearing!  So, I guess I missed a few parts but more of an attention issue than a hearing issue. However, this is still not "perfect". At the end of the lecture, there was Q and A. I did have trouble understanding other peoples' questions. It is weird that some voices can sound so loud, while others are too quiet. I wonder if something like this can be addressed in my next adjustment or if this is just the nature of speech?

Since my readjustment, I feel that I take much more notice to the sound of walking. Shoes hitting the floor. Legs rubbing together. I feel like I make such a commotion when I am walking around my office that it makes me want to tiptoe sometimes. Since our production room is right by my office, I have found myself very distracted by the sound of the printer. I often get so distracted that I have to close my door. Also, I noticed that the heat vents in my office make a squeaky noise when they are on and running. Not to say that I am not grateful but it is crazy how I never noticed this before because it can be quite annoying...

I feel like the dishwasher in our home gets increasingly loud every time I turn up my Esteem device. Being on volume 10, I found the dishwasher so loud that one time, I started yelling at my husband to stop using his electric saw in the basement. I was so confused! The sound was so loud that I thought it sounded like someone using heavy machinery. haha. 

I haven't been able to wear sun glasses for almost 6 months since the side of my head is still a bit tender when I put pressure against it. When I tried them out this week, I realized that it doesn't hurt anymore!

Well, that is all I can think of at the moment! 

YOU Have the Power to Control the Speed of Conversation

My auditory therapy for today consisted of two different exercises. For the first exercise, my therapist would say a word sound, such as “S” or “F” or “Ch” and I would have to say a word that started with that sound. So, if my therapist said “Sh”, I would say “Ship” or “Sheet”. For the second exercise, my therapist would read a sentence and I would have to tell her which word seemed off. The word that was off was very similar to what the correct word should have been. For example, “If you are cold, put on a coke.” This is my 3rd therapy session and I am still finding some of these exercises to be quite difficult for me. The second exercise was a little easier than the first since I had some contextual information to help me identify what the correct word. However, I am still having a difficult time differentiating between "g" and "d" sounds as well as between the "s", "f", and "th" sounds. It has only been 3 weeks since I started, so I do have a ways to go! Hopefully with more time and practice this will all become easier...

While chatting with my therapist after our session, she told me something very interesting.  She said that we actually have the ability to control the speed of our conversation. Have you every been around someone who is really laid back and talks really slowly? You can't help but notice that you start to become more relaxed yourself and you will find yourself talking at a slower pace. The opposite is true as well. If you talk quickly, that will boost the adrenalin of those around you leading them to also talk at fast pace. Obviously, someone talking fast is much more difficult to understand than someone who talks slowly. So, she told me that since I tend to talk fast, I should try to make a conscious effort to talk slower. While it does take time, practice, and a conscious effort, this tactic can actually help you better understand in conversations. Amazing! 

Auditory Therapy Puts Me Another Step Closer

For my first official therapy session, we did two different exercises. The first exercise was to practice hearing the beginning sound of words. For this exercise, she went through a list of 120 word pairs and I had to tell her if the beginning sound of the two words were the same. Here are a few examples:

Drive-Live

News-Views

Same-Fame

Top-Hop

Skip-Ship

While doing this, she was facing me, but had the piece of paper covering her mouth. I also made sure to look down so that I could practice not being so dependent on looking at people to hear them. If I got the answer incorrect, she pulled the paper down and repeated again allowing me to read her lips to identify the sound.

While this seems like such a simple task, it was not so simple for me. I didn’t do horribly. I was able to identify beginning sounds for 103 out of the 120 word pairs (85.8%). However, I did guess on some of them... If she had asked me to repeat the two words, I probably would have done much much worse. I told her about this and she said that it is okay and that right now she just wants me to listen to the word sounds instead of trying to identifying the word. This will come later!

Since I am having trouble hearing short quick constanant sounds all of the word pairs I listed above were ones I got incorrect. To me, the word “same” and “fame” sound the same because all my brain knows how to hear is the “_ame” of the word.

The next exercise we did was similar. However, instead of identifying if the beginning of the word was the same, I had to identify if the end of the word was the same (i.e., if the words rhymed). Here are a few examples:

Call-Pull

Bend-Wind

Bind-Blond

Boat-Tote

I am happy to say I did much better on this one! I was able to correctly identify if a sound rhymed for 111 of the 120 words (92.5%). The word pairs that I listed above are a few that I was not able to identify on my first try. My therapist reviewed these with me and showed me how the quicker vowel sounds may also be difficult for me to differentiate between such as the “eh” sound in bend and “ih” sound in wind.

Before she left, she gave me an interactive computer program that she often uses for her dyslexic patients since it is all about sound discrimination: what each letter sounds like, the difference between each sound, how to sound out different words. Remember "Hooked on Phonics". Well, it is sort of like that. She gave me the first level of this program to do as practice on my own and said that she would give me the next program once I got through this whole program. She also provided me with some "homework" for me to practice with Fraser. I am actually excited to practice all of this!

This whole experience of seeing a therapist has been really eye opening for me. I think it is helpful for me to understand and see why I am missing the parts of conversation that I do and why I think people say something completely different than they do. I think that this realization and understanding has been and will continue to be a large part in my path to acceptance. When we are in denial about our hearing loss, we do not really understand what is happening to us. Why is it becoming difficult to have a conversation with someone in a restaurant? Why am I not able to hear people when they talk to me from the next room? Why is it less enjoyable for me to be around my friends and family? Why am I getting angry and frustrated with people for not talking loud enough? Why am I so tired all the time? These are just few of the many questions we are pondering in our minds. It is very liberating to have less questions and more answers!

Whether the problem for me is more physical (i.e., my actual hearing) or mental (i.e., my brains ability to identify these sounds), I am not sure at this point in the process. Thinking about this, since I was in such denial about my hearing loss I waited until I absolutely HAD to get hearing aids. Even then, I only wore them to class and work until about 3 years ago. I think that prolonging the inevitable act of getting hearing aids is why these sounds are not familiar to me. If I would have gotten hearing aids when my hearing loss was only mild, I may have been able to still hear the “f” and “t” and “s” sounds with hearing aids, and therefore, my brain would not have lost the ability to identify these sounds or my brain would not have been in the dark about these sounds for 10 whole decade; the gap would have at least been smaller.

I know I cannot drive myself crazy with these "what if's". This is all in the past, and there is nothing that can be done now except to move forward with the knowledge I now have. However, I am saying this and sharing this to motivate others to get hearing aids before it is too late to truly reap all of the benefits they have to offer. Technology today is AMAZING and sadly, most people do not take full advantage of this due to the stigma society puts on wearing hearing aids. If you have the choice... Don't do what I did! Don’t wait! Strive to understand! Get your hearing checked out! Get hearing aids if your audiologist says you need them! Life is too short to waste it in the haze of denial. Acknowledge, accept, and move forward. How do you expect to get anywhere in life when you are just standing still?

Evaluation Appointment With An Auditory/Speech Therapist

While I am constantly amazed at all of the new noises I am now able to hear, I am still having a difficult time with my speech discrimination (or understanding).  I was told by the Envoy Technician that this is likely due to my dependency on reading lips. If I am not looking at the person who is talking, I am not able to understand what they are saying. While I hear them loud and clear, my brain cannot process what is being said. The best way I can explain what this is like is to picture yourself in a room where no one speaks your language. While you have the physical ability to hear, you have no idea what they are saying. You are looking around constantly to try to pick up on social cues that will help you follow what is being said. You may feel isolated. You may feel alone. You may even feel a bit paranoid like people are talking or laughing about you. Sometimes you laugh it off and pretend to go along with the conversation and other times you get so down on yourself that you escape the situation as soon as you can.

I do not want to be like this anymore. I want to be able to take advantage of my new ability to hear. I don't want to have to hear by looking. I want to hear by hearing as much as my physical ability will let me! 

So, I decided to contact an Auditory/Speech Therapist to help me with my ability to understand running conversation, regardless of my financial situation (credit cards were created for a reason, right?). My inability to hear conversation and to be social affects the quality of my life and so, I felt that it was necessary for me to take this next step. I have come to terms with the fact that I may never be able to have the hearing that I used to have, but I do not want to have any regrets in this process or look back and say "I wish I did this" or "I should have done that" to help myself. I have been thinking about this for a while and I would regret it if I did not give myself this opportunity.

I had my evaluation this week, which consisted mostly of talking about the history of my hearing loss, my progress with the Esteem hearing implant, and situations that are difficult for me to hear. I was also tested on my word and sound discrimination. Throughout the entire test, she sat behind me so that I would not be able to read her lips. For the first part of the test I had to repeat the word. Very basic and similar to the speech discrimination test that are given by my audiologist.

For the second part of the test, I had to repeat sentences. However, they were sentences that did not make sense (e.g., I put the basketball in the toaster). Since most hearing impaired individuals actually pick up on about 30% percent through reading lips and 30% through actually hearing, they must fill in the rest of the conversation with social cues and other people's facial expressions. If we miss even one word, or interpret one word incorrectly, then this has a HUGE effect on our understanding since topics switch very readily in running conversation. So, by having to repeat sentences that do not make sense, this really test how much I am able to hear and how much I am filling in the blanks.

The third part of the evaluation was repeating a sentence in which I had to fill in the last part. For example, she would say, “You cook a turkey in the...” and I would say "oven" if I had heard the sentence correctly. She made sure that there were minimal options for the blank word in the sentence. So again, this test how much of the sentence I am hearing.

Essentially, she found that I am having a difficult time with soft, short consonant sounds, such as the “s” and the “f” sounds. These are short and quick sounds that fall within the higher frequencies, which my brain is not use to hearing since I haven’t heard these sounds in the last 9 years!

She said that therapy and practicing sound discrimination exercises will improve my ability to hear and identify these sounds more readily. Even if she has to repeat a word 100 times, each time she makes that sound or says that word, it will build and strengthen the connection in my brain.

We agreed to meet for 30 minutes ever week for now until she develops a more finalized work plan for me. She said that she would be willing to provide me with practice exercises to do on my own, if I cannot afford to have her come every week. She also mentioned that it typically takes about 3-6 months of intense practice in order to see a difference. This means practicing EVERY SINGLE DAY.

I think God is truly testing my ability to be patient... I don’t know where I got the idea in my head that this would be an “easy” process. Life is all about learning and finding who we are. Where would inner and spiritual growth come from if everything was easy and perfect all the time! While the last decade has not been easy for me, I have grown a tremendous amount and learned so much about myself through this experience. I am actually looking forward to my journey of acceptance and finally finding peace within myself. I have been struggling through life for a while now and it feels good to let go of this a little bit each day.

Let go and Let God.

Follow-Up On My Recent Hearing Test Results

I finally heard back from Michelle today. She said that she thinks the big reason why I saw worse results at my last visit was due to my illness and the fluid in my middle ear. She said that even a small amount of fluid could disrupt how the device works as well as my ability to hear. Between my allergies and getting over a cold, I was fighting quite a bit! She also mentioned that my hearing should improve as I continue to heal over the next couple of months, and that I should not be worried….just yet at least.

I had also asked her what type of results I should expect to see and she said that most patients see an average of 30-40 decibels of gain (that would still put me in the moderate loss range in the high frequencies). Before going into this, I was told that my hearing would be close to normal again, so this scared me a little bit. I was definitely expecting a greater overall gain. She said that it is still too early in the process to tell what my gain will be and that I need to be a bit more patient with the process.

Why do people keep telling me this?

In thinking about my lack of patience, I found a very inspiring quote:

“Have patience with all things, but chiefly have patience with yourself. Do not lose courage in considering your own imperfections but instantly set about remedying them - every day begin the task anew.”

Saint Francis de Sales

French Saint & Bishop of Geneva (1567 - 1622)

Although I must be patient with this process, I must also never give up on this life changing journey. I must not lose courage in this process when I am feeling down or things are not going my way. Everyday is a new day and an opportunity for a new beginning.

A Survival Guide for New Deafies! (GREAT BOOK)

My husband got me a Kindle for Christmas and I found the most amazing book! It is called A Survival Guide for New Deafies! and is specifically written for people who suffer from late on-set hearing loss, LIKE ME!

It is a short book (only 39 pages) and took me about 30 minutes to read. It is one of those books that I will read over and over again whenever I am feeling down about myself or am unable to hear something; very inspiring. If you are suffering from hearing loss and are having a difficult time accepting it as your reality, then I definitely suggest you read this. It is also a great book for family and friends of Deafies to read so that they can understand the struggle we face and how to react to your situation.

Here are the "rules" that are outlined in this book:

• Always have a sense of humor about your hearing loss
• Never Apologize for being a Deafie! NEVER!
• Be honst about your new Deafie status to old and new friends, family, and associates 
• Learn all modes of communication
• Stay social!
• Understand your hearing loss
• Allow for only small moments of self pity!!
• Beware of non-believers

Just thought I would share this piece of inspiration to anyone out there struggling with hearing loss! :)